An Undiagnosed Bladder Dysfunction
After being told in her 30s that she would need to catheterise for the rest of her life, Serena Green felt humiliated. Now she is proud to catheterise but her journey to acceptance in the years following involved friends, family and healthcare professionals.
Serena had unknowingly lived with an undiagnosed bladder dysfunction for years and it was only due to an MRI scan following a herniated disc in her back that the problem was identified.
The MRI showed that I had a very large mass in my abdomen which needed a bit of exploration. Then it was found out that I had quite a large bladder, not necessarily something to be proud of, but all of the various tests that I had afterwards showed that potentially when I’d slipped a disc it had damaged some nerves in my spine. This meant that I’d totally lost the sensation of knowing when I needed to go for a wee and my body totally overcompensated for that and I’ve got excellent muscles at the bottom of my bladder.
So unfortunately I don’t know that I need to go for a wee and even if I did, I wouldn’t actually be able to pee.
Following urodynamic tests Serena was initially very resistant to the thought of having to catheterise and was given the option to take some time to consider her options. When I was told I had a problem with my bladder I was absolutely mortified. You don’t expect to hit 40 and be told that somehow your body has gone wrong and you’re in danger of needing dialysis. So, it was a bit of a pivotal moment for me really. I left it and I left it and I left it… and I tried to hide this horrible problem somewhere. But two or three years later I knew that the problem was getting worse. I couldn’t pass any urine at all. I was very uncomfortable. I looked very bloated and looked very overweight really. So, I went back and had a second set of urodynamic tests with a lovely consultant and a fabulous bladder care nurse, and we talked through the options. I took the plunge and decided to start self-catheterising.
It wasn’t an easy step. I felt humiliated, very embarrassed and, because it’s new, most people don’t cope well with change, not when it’s something to do with the body. It was quite a difficult time and I’m very thankful to my lovely husband for being so supportive.
Being taught to catheterise can be a relatively short process but the self-learning that follows your initial appointment can be a longer process. When I first started self-catheterising the bladder care nurse at my local hospital was really patient with me, but you’re in quite a false environment. I was on a hospital couch and she was showing me what to do. She was very clear with what I needed to do and how often I should self-catheterise and sent me home with a few catheters to get me going.
Of course, moving from that sterile couch environment to your own house, and of course your own bathroom, was quite a difficult transition. So, my advice really to anyone who is new to this is get yourself into your own bathroom as quickly as possible and practice as often as you safely can. Obviously, you don’t want to keep self-catheterising 100s of times in a day. Just do it when you need to but give yourself lots of peace and quiet – lock the bathroom door so the kids, the wife, the husband, the pets don’t come in. Just take time to learn how your body works and what’s best for you when using a catheter.
Serena hasn’t been alone in her journey with IC and she praises those who have been there to support her along the way. I feel like a sports player with my team around me, especially the bladder care nurses because they made all the embarrassment go away. These men and women deal with IC every day of their lives and its normal to them. They’ve seen it all before, they’ve done it all before, they’ve answered all of those weird questions before.
As well as my healthcare professionals there have been some other interesting helpers for me along the way. Clearly my husband is fabulous. We go on holiday a lot and he’s the one who goes and finds a suitable toilet for me. He knows my high standards of wanting soap, wanting clean towels, wanting good light, so he’s terrific for that. He’s on loan if anyone needs to borrow him!
In that first year I had a few difficult conversations with friends and people at work. They were a bit embarrassed, but it gave me the opportunity to learn how to talk to people about IC. As time has gone on having these conversations has made me much more positive and confident about IC. When you start talking to people you don’t feel embarrassed anymore and actually I’m very proud to self-catheterise.
Six years down the road from her decision to start IC, Serena wants to share a few pieces of advice with women who are getting started with catheterisation. I’m very passionate about IC because it’s made a really big difference to my life and how I physically feel, so I really want everyone else to benefit from that positivity.
My first piece of advice on anyone else going on this journey is to stay hydrated. We hear all the time about the benefits of water and it’s especially important when you’re self-catheterising as it can reduce the number of infections.
My next piece of advice is to be confident. I think we feel we are all self-catheterising because we’ve got some sort of problem with our body, but when you self-catheterise it should make you feel positive. So be confident in what you do, trust me nobody looks at you when you are using a public toilet!
As a professional wheelchair tennis player, 32-year-old Austrian Tina Pesendorfer travels a lot. With a busy training schedule, she's glad catheterising no longer distracts her.
To live with a condition that requires you to catheterise on a regular basis may feel overwhelming in the beginning. Find comfort in the fact that you are not alone.
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